Lbelle78 Posted March 3, 2017 Share Posted March 3, 2017 Hello everyone. I never thought I would need to seek this type of forum out, but am glad it is here. I am a 38 year old nonsmoker, mother of 2 young children. I recently had a bad bout with the flu and could not regain my strength. I was taken to the ER with severe fatigue, no cough, back pain and low grade fever. They did a chest x ray and diagnosed as pneumonia, however the doctor said it was an atypical presentation in the upper right lobe of my lung. I stayed a few days in the hospital and they did a follow up chest x ray to monitor my progress. I was concerned when the doctor then ordered a CT scan. They came in later and stated that this was a very unusual, concerning result and looked to possibly be a large nodule or mass and the density and location could indicate cancer. They were hoping to get me in Monday to see a pulmonologist, but now I have to wait several weeks to get in unless there is a cancellation. I was just released from the hospital today, so I am still very weak. I am more than terrified at this point. The doctor stated that a bronchoscopy would probably be necessary. I have never had a major health issue, so I'm not dealing well with this. Help!! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 4, 2017 Share Posted March 4, 2017 Lbelle, Oh my! I'd be terrified if I needed to wait for several weeks given your problems. Ok so let's break down the problem. CT scan showed a suspicious mass. I've had both pulmonologists and thoracic surgeons perform bronchoscopy. So see if a thoracic surgeon is more available. Do you have a general practicioner or family doctor? If you do, see if your GP can speed availability of either specialist. There are two kinds of bronchoscope. A flexible scope and a rigid scope. Light anesthesia is for the former and heavy is required for the latter. Years ago, only thoracic surgeons did a rigid scope procedure in a hospital setting. Now, my thoracic surgeon does them in day surgery or an outpatient day surgery setting and he does both rigid and flexible scope sessions in both settings. I've been scoped many times. The doctor can both see inside your thoracic cavity if an incision is made at the base of your throat or in your lung through your airway. Moreover, the scope can take samples of the mass for a pathologist's examination. The sample will be definitive -- cancer or no cancer. You didn't say where your mass was so I'm not sure how the procedure will be performed. Of course, the mass could be a residual from your atypical pneumonia. And you may have nothing but more recovery to deal with. That is why you should reach out to your GP to set help finding a available specialist quickly. More questiins. Ask away. Stay the course. Tom LaurenH, Melissa Blevins, Mally and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Lbelle78 Posted March 4, 2017 Author Share Posted March 4, 2017 Thank you so much Tom for replying so quickly. They found this in the upper right lobe of the lung. We will work on contacting someone else Monday for sure. Hoping for a cancellation opening but that is uncertain. The bronchiscopy sounds more invasive than I was thinking. Scary times. Mally 1 Quote Link to comment Share on other sites More sharing options...
Lbelle78 Posted March 4, 2017 Author Share Posted March 4, 2017 Does bloodwork and oxygen levels give any indications in an illness of this type? Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 4, 2017 Share Posted March 4, 2017 Lbelle, Blood work indicators for lung cancer? Not that I've heard about. They are researching blood and breath tests but nothing yet that substiantes a diagnosis. Diagnosis seeks to determine two things: where the cancer is in the body (stage) and what form of lung cancer (type). Scans (CT, PET/CT, MRI and brain and sometimes bone scans) determine stage. Pathology reports of tumor samples determine type. Samples can be obtained by needle biopsy, bronchoscope, or surgery. It occurs to me that depending on the location in the upper right lobe, a surgeon may be able to perform a needle biopsy. So, that might be another alternative to waiting for a pulmonologist. Stay the course. Tom Mally 1 Quote Link to comment Share on other sites More sharing options...
TeriK Posted March 4, 2017 Share Posted March 4, 2017 Hello everyone. I never thought I would need to seek this type of forum out, but am glad it is here. I am a 38 year old nonsmoker, mother of 2 young children. I recently had a bad bout with the flu and could not regain my strength. I was taken to the ER with severe fatigue, no cough, back pain and low grade fever. They did a chest x ray and diagnosed as pneumonia, however the doctor said it was an atypical presentation in the upper right lobe of my lung. I stayed a few days in the hospital and they did a follow up chest x ray to monitor my progress. I was concerned when the doctor then ordered a CT scan. They came in later and stated that this was a very unusual, concerning result and looked to possibly be a large nodule or mass and the density and location could indicate cancer. They were hoping to get me in Monday to see a pulmonologist, but now I have to wait several weeks to get in unless there is a cancellation. I was just released from the hospital today, so I am still very weak. I am more than terrified at this point. The doctor stated that a bronchoscopy would probably be necessary. I have never had a major health issue, so I'm not dealing well with this. Help!!Hi, I had a very similar experience on diagnosis, with mass in right upper lung, thinking first it was pneumonia . I was a non smoker, athlete, fairly young with two kids. I would ask to be seen by cancer center immediately. If you do not live near a major cancer center, have your insurance refer to the closest one to you, see a lung oncology specialist and have your tumor biopsied. There are less invasive procedures, and have the biopsy tested for genetic mutations. You most likely gave a mutation that can be treated with targeted therapy.Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Meloni Posted March 4, 2017 Share Posted March 4, 2017 I agree with the others about getting seen sooner. I was diagnosed last year at age 40, and like you an atypical demographic for lung cancer. I got the run around a few times before finding a wonderful pulmonologist who scheduled me in the following day. Don't let the front desk schedulers put you off. Many don't know the difference between routine and priority needs. Make sure you speak with the doctor's nurse. Tom's idea of having your PCM advocate for you can be helpful as well. Also, how many pulmonologists are in your coverage area? Please follow up. I hope to from you soon. <3 Melissa Blevins and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
CIndy0121 Posted March 4, 2017 Share Posted March 4, 2017 I agree that your PCP is your health care advocate and should be able to expedite your diagnosis with the appropriate specialists. This is just my experience and my observations from posts by many other patients. I would go as directly as possible to the needle biopsy by an interventional radiologist. Of course, bronchoscope and needle biopsy do both depend to some extent on the location of the tissue to be sampled. I cannot tell you how many times I have read that someone's bronchoscopy reported either "inconclusive" or "no malignant cells". Mine was Sept. 30, but my final diagnosis by needle biopsies of both lungs wasn't made until Jan. and Feb. (stage IV). It will ease your mind if it is negative, but if it is positive, you will still need to get to a medical/lung oncologist and complete the staging process. The scheduling and appointments is overwhelming on top of the devastating emotions and thoughts about the possibilities. We admit that it is difficult; we can say that because we have been there. We all hope and pray for the best possible outcome for you. The best advice you will get (and you will get it repeatedly) is that you have to be a proactive self-advocate. Please let us know if you make any progress next week. cindy Tom Galli, Melissa Blevins and Meloni 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 5, 2017 Share Posted March 5, 2017 Lbelle, Cindy is exactly correct to point out a needle biopsy performed by an interventional radiologist. This specialist may be the easiest and best way to get confirmation about your mass. Further, she's right about the downside of bronchoscope procedures. My first could not obtain a biopsy sample. I had an interventional radiologist re-install a chest tube that fell out of my back. Actually two were involved in the procedure and they used a fluoroscope to determine where to make the new incision. It was performed with a local anesthetic and was a piece of cake. The good thing about interventional radiologists is most medium to large hospitals have them and they are readily available. Your oncologist ought to be able to arrange a consultation. Stay the course. Tom Meloni 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted March 5, 2017 Share Posted March 5, 2017 Hi Lbelle, Wow! You're getting great advice from everybody! I agree that it's important to be your own advocate. Ask lots of questions (including who can see you sooner) and ask for copies of test results. Some doctors assume we won't understand technical stuff, and sometimes I don't, but with the internet I can find out a lot. Information is your friend. Get as much as you can. If you can get someone to go with you to appointments, great! Make a list of questions. Have your support person take notes. Hang in there! Lung cancer is my 3rd primary cancer and I'm hanging in there and living a good life. You can too. Tom Galli, Meloni, Melissa Blevins and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted March 5, 2017 Share Posted March 5, 2017 Hi Lbelle, Get a notebook, with pockets to keep paperwork in. Add paper to write down questions as you think of them to ask your doctor. (This is extremely helpful as sometimes a question will just come to you out of the blue, and if you're busy is easily forgotten. Write them down when you think of them). Keep copies of everything, as it's extremely helpful if you change doctors or seek a second opinion. Also, NEVER be afraid to seek another opinion. Most doctors even encourage it.I research terms from the doctor and tests I don't understand. Learn as much as you can about what is going on in your body, and why this test or that procedure needs to be performed.You should definitely try to get an earlier appointment by going through your PCP. Check with your insurance company for their policy about specialist visits. When it was first noticed that I had a mass on my lung, my PCP office got me in to see a pulmonologist within just a few days.I know you are scared, and that's ok. It's a terrifying journey to begin. Do you have someone who can become what is called a caregiver? Basically it's someone who can go to the Dr with you and be a second set of ears, who can write down information for you and help you sort through appointments, financial stuff, insurance stuff, transportation to appointments, help at home with childcare while you go to appointments, etc? It can all get pretty overwhelming and some help is a huge relief.Mostly, just try to take it all one day at a time. Concentrate on your children and home while you are waiting for appointments and results. Spend some time pampering yourself. You are important and you need to take care of you during all of this. Someone is always here to talk and try and answer questions.Blessings to you,MichelleSent from my SAMSUNG-SM-G890A using Tapatalk Melissa Blevins, Mally and BridgetO 3 Quote Link to comment Share on other sites More sharing options...
Lbelle78 Posted March 6, 2017 Author Share Posted March 6, 2017 Thank you to everyone, you have all been so kind and helpful. Was able to get a followup appt.for in the morning, and our local nurse practitioner called my husband this morning to check on me and found out about our situation. She used to work for a pulmonologist at a large medical center nearby and is getting me an appt. for next week! Mally, Melissa Blevins and Meloni 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 6, 2017 Share Posted March 6, 2017 Lbelle, Good news on your appointment. Let us know the results of the bronchoscope when you receive them. Hopefully, this will all be leftover stuff from your pneumonia. Stay the course. Tom Meloni, Melissa Blevins and Mally 3 Quote Link to comment Share on other sites More sharing options...
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